confused and angry

[happymomof4kids]

Thank you all for your advice. I do not know what test they did on me and I know for sure on my son they only did the 97panel not the full panel. it was ordered through his Gi doctor not his pulmonologist doctor. And I do not know on my daughter either.

It would be nice if I could get my husband to read about CF and understand where i'm coming from, but he won't he is in complete denial that they could have CF. I feel so overwhelmed dealing with this all myself. I am glad I found this site that hopefully I can get some support and advice. I feel so alone.

Again Thanks

Lori

 

[happymomof4kids]

Thank you all for your advice. I do not know what test they did on me and I know for sure on my son they only did the 97panel not the full panel. it was ordered through his Gi doctor not his pulmonologist doctor. And I do not know on my daughter either.

It would be nice if I could get my husband to read about CF and understand where i'm coming from, but he won't he is in complete denial that they could have CF. I feel so overwhelmed dealing with this all myself. I am glad I found this site that hopefully I can get some support and advice. I feel so alone.

Again Thanks

Lori

 

[happymomof4kids]

Thank you all for your advice. I do not know what test they did on me and I know for sure on my son they only did the 97panel not the full panel. it was ordered through his Gi doctor not his pulmonologist doctor. And I do not know on my daughter either.

It would be nice if I could get my husband to read about CF and understand where i'm coming from, but he won't he is in complete denial that they could have CF. I feel so overwhelmed dealing with this all myself. I am glad I found this site that hopefully I can get some support and advice. I feel so alone.

Again Thanks

Lori

 

[happymomof4kids]

Thank you all for your advice. I do not know what test they did on me and I know for sure on my son they only did the 97panel not the full panel. it was ordered through his Gi doctor not his pulmonologist doctor. And I do not know on my daughter either.

It would be nice if I could get my husband to read about CF and understand where i'm coming from, but he won't he is in complete denial that they could have CF. I feel so overwhelmed dealing with this all myself. I am glad I found this site that hopefully I can get some support and advice. I feel so alone.

Again Thanks

Lori

 

[happymomof4kids]

Thank you all for your advice. I do not know what test they did on me and I know for sure on my son they only did the 97panel not the full panel. it was ordered through his Gi doctor not his pulmonologist doctor. And I do not know on my daughter either.
<br />
<br />It would be nice if I could get my husband to read about CF and understand where i'm coming from, but he won't he is in complete denial that they could have CF. I feel so overwhelmed dealing with this all myself. I am glad I found this site that hopefully I can get some support and advice. I feel so alone.
<br />
<br />Again Thanks
<br />
<br />Lori
<br />
<br />

 

[Ratatosk]

Being that there are over 1500 mutations for CF, I guess I would put for more extensive testing. Unfortunately, there are several people on this site who've had normal carrier and CF testing results, only to find out later that they do in fact either carrier a cf gene or have CF.

 

[Ratatosk]

Being that there are over 1500 mutations for CF, I guess I would put for more extensive testing. Unfortunately, there are several people on this site who've had normal carrier and CF testing results, only to find out later that they do in fact either carrier a cf gene or have CF.

 

[Ratatosk]

Being that there are over 1500 mutations for CF, I guess I would put for more extensive testing. Unfortunately, there are several people on this site who've had normal carrier and CF testing results, only to find out later that they do in fact either carrier a cf gene or have CF.

 

[Ratatosk]

Being that there are over 1500 mutations for CF, I guess I would put for more extensive testing. Unfortunately, there are several people on this site who've had normal carrier and CF testing results, only to find out later that they do in fact either carrier a cf gene or have CF.

 

[Ratatosk]

Being that there are over 1500 mutations for CF, I guess I would put for more extensive testing. Unfortunately, there are several people on this site who've had normal carrier and CF testing results, only to find out later that they do in fact either carrier a cf gene or have CF.

 

[sweetwhite32]

I have a son who sweats 58 59 48 46 one child, the cf child sweated 60 the first and 102 and a 112 the last time and he has 2 ddf508 genes..people who have the carrier gene of ddf508 seem to either be symtomatic if not cf it self...I dont know why but i can say from having myself be a ddf508 carrier and one child with 2 ddf508 genes and another with one ddf508 we are all on most of the same maintainace meds with the exclusion of hypertonic and pulmozyme..we use plant enzymes and isaiah who is the cfer uses pig enzymes and the other 2 aerosols... so this might ease ur mind a little on the one child but it does seem as your first has the classical atypical cf...

 

[sweetwhite32]

I have a son who sweats 58 59 48 46 one child, the cf child sweated 60 the first and 102 and a 112 the last time and he has 2 ddf508 genes..people who have the carrier gene of ddf508 seem to either be symtomatic if not cf it self...I dont know why but i can say from having myself be a ddf508 carrier and one child with 2 ddf508 genes and another with one ddf508 we are all on most of the same maintainace meds with the exclusion of hypertonic and pulmozyme..we use plant enzymes and isaiah who is the cfer uses pig enzymes and the other 2 aerosols... so this might ease ur mind a little on the one child but it does seem as your first has the classical atypical cf...

 

[sweetwhite32]

I have a son who sweats 58 59 48 46 one child, the cf child sweated 60 the first and 102 and a 112 the last time and he has 2 ddf508 genes..people who have the carrier gene of ddf508 seem to either be symtomatic if not cf it self...I dont know why but i can say from having myself be a ddf508 carrier and one child with 2 ddf508 genes and another with one ddf508 we are all on most of the same maintainace meds with the exclusion of hypertonic and pulmozyme..we use plant enzymes and isaiah who is the cfer uses pig enzymes and the other 2 aerosols... so this might ease ur mind a little on the one child but it does seem as your first has the classical atypical cf...

 

[sweetwhite32]

I have a son who sweats 58 59 48 46 one child, the cf child sweated 60 the first and 102 and a 112 the last time and he has 2 ddf508 genes..people who have the carrier gene of ddf508 seem to either be symtomatic if not cf it self...I dont know why but i can say from having myself be a ddf508 carrier and one child with 2 ddf508 genes and another with one ddf508 we are all on most of the same maintainace meds with the exclusion of hypertonic and pulmozyme..we use plant enzymes and isaiah who is the cfer uses pig enzymes and the other 2 aerosols... so this might ease ur mind a little on the one child but it does seem as your first has the classical atypical cf...

 

[sweetwhite32]

I have a son who sweats 58 59 48 46 one child, the cf child sweated 60 the first and 102 and a 112 the last time and he has 2 ddf508 genes..people who have the carrier gene of ddf508 seem to either be symtomatic if not cf it self...I dont know why but i can say from having myself be a ddf508 carrier and one child with 2 ddf508 genes and another with one ddf508 we are all on most of the same maintainace meds with the exclusion of hypertonic and pulmozyme..we use plant enzymes and isaiah who is the cfer uses pig enzymes and the other 2 aerosols... so this might ease ur mind a little on the one child but it does seem as your first has the classical atypical cf...

 

[UsualSuspect]

Lori,

Another thing to take into account regarding sweat testing is the size(weight)of the sample. It generally should be at least 75mg, but often exceeds 100mg. Given that one result was high end borderline, you should probably have them re-sweated on another day. I hate to assume anything, so I'm hoping you had the testing done at an actual CF center. Whether or not your son has CF, he may be pancreatic insufficient. I'm hoping the GI doctor sent a stool sample to test for that, which is called stool elastase.

 

[UsualSuspect]

Lori,

Another thing to take into account regarding sweat testing is the size(weight)of the sample. It generally should be at least 75mg, but often exceeds 100mg. Given that one result was high end borderline, you should probably have them re-sweated on another day. I hate to assume anything, so I'm hoping you had the testing done at an actual CF center. Whether or not your son has CF, he may be pancreatic insufficient. I'm hoping the GI doctor sent a stool sample to test for that, which is called stool elastase.

 

[UsualSuspect]

Lori,

Another thing to take into account regarding sweat testing is the size(weight)of the sample. It generally should be at least 75mg, but often exceeds 100mg. Given that one result was high end borderline, you should probably have them re-sweated on another day. I hate to assume anything, so I'm hoping you had the testing done at an actual CF center. Whether or not your son has CF, he may be pancreatic insufficient. I'm hoping the GI doctor sent a stool sample to test for that, which is called stool elastase.

 

[UsualSuspect]

Lori,

Another thing to take into account regarding sweat testing is the size(weight)of the sample. It generally should be at least 75mg, but often exceeds 100mg. Given that one result was high end borderline, you should probably have them re-sweated on another day. I hate to assume anything, so I'm hoping you had the testing done at an actual CF center. Whether or not your son has CF, he may be pancreatic insufficient. I'm hoping the GI doctor sent a stool sample to test for that, which is called stool elastase.

 

[UsualSuspect]

Lori,
<br />
<br />Another thing to take into account regarding sweat testing is the size(weight)of the sample. It generally should be at least 75mg, but often exceeds 100mg. Given that one result was high end borderline, you should probably have them re-sweated on another day. I hate to assume anything, so I'm hoping you had the testing done at an actual CF center. Whether or not your son has CF, he may be pancreatic insufficient. I'm hoping the GI doctor sent a stool sample to test for that, which is called stool elastase.